How accurate is amniocentesis please?

[AramintaAlice]

Hello,

I have 7 children and am currently pregnant with my 8th (accidentally, the only unplanned one).

I had a nuchal fold test but the operator said the baby was lying the wrong way and therefore it was hard to get a good reading -she took one anyway and it came out thicker than average at 3 but not over the limit of 3.5. Then my bloodwork came back as high risk too, 1 in 10 and combined with my age it gave a 1 in 3 risk of Down Syndrome.

I had an amnio and it's positive. Please don't judge me, but I've decided (after many tears and agonies) to have a termination BUT I still have this awful and tearing worry that the amnio might be wrong or that they mixed up my sample in the lab.

I know many people will call this denial but I don't think it's that...I'm just terrified that I might be terminating a perfectly normal baby as the scan was botched and the bloodwork came back as 1 in 10..yes very high but there's 9 chances in 10 that it's wrong. I've also read that 1/1000 results can be wrong, a lady apparently was given a false positive due to starting the menopause..probably rubbish I know but I'm soooo scared .

I know the amnio is supposed to be 100% but am so scared that in a lab where they'll be dealing with many high risk results, mine may have become mixed up.

I can't eat or sleep properly..I'd be so grateful for some help on this subject. The other children take up so much of my time that I can't cope with a child that may be very severely disabled, yet I'm terrified that I'm terminating a normal baby even though it wasn't planned and was a great shock.

Thanks so much to anyone who replies :)

[Makinglists]

Please be kind to yourself - these doubts are normal - I've had two T21 pregnancies that we ended in termination (diagonised by CVS)I went through the same thoughts what if it was wrong, what if - but the decision was made on the best medical evidence aviable and also our own family circumstances - and with that thought we are satisfied we did the right thing.

Please be kind to yourself your emotions will be a bit of a rollercoaster and you no never get 'over it' but it does become less painful and you do start to see it in the 'past tense' rather than living it every day. Have you been offered any councelling? - we had it for about a year and it it did help - also ARC (Ante Natal Results and Choices) were great and they do have on-line forum to support people in our situation.
Love

Makinglists.

PS - sorry about the typos haven't got my glasses on!!

[AramintaAlice]

Thank you so much for your reply Makinglists...did you have the terminated babies checked to see if the prediction was accurate. Thats what worries me the most, the fact that maybe the test was wrong or the lab got the results mixed up.

The hospital said that the fetus is checked afterwards and that I will be told if the diagnosis was correct - but it's obviously too late then if it wasn't correct.

Once again, thanks for your kind words and I'm so sorry you had to go through this twice.

[Makinglists]

ArmamintaAlice - No I didn't have the babies checked but I guess the situation may have been a bit different for us as I had the terminations at 13 weeks after CVS. We did have written confirmation of the results a week or so later though (from getting the test results). A kindly chaplin at the hospital always told us that there is no right and wrong in making these decisions the only thing that matters is that you make a good decision based on the information you have and having weighed up all the relevant factors for your family - I've always found that thought a great comfort.

If you go to the ante-natal tests topic there are quite a few threads with people who are in or have been in your situation and they can be wonderfully supportive with factual support as well as emotional support.

Thinking of you.

Makinglists

[AramintaAlice]

You're an angel, thank you so much for your support x

[oliviacrumble]

Araminta, I'm so sorry to hear of your news, and just wanted to offer you some reassurance.

I had a termination three weeks ago, after discovering via amnio that the baby had Downs. It's a terrible decision to have to make and we agonised before during and afterwards as to whether we were doing the right thing. I now feel much more certain that the deciosion we made was the right one for our family.

Like you, I became terribly worried that the test results may have been wrong, particularly as we had the termination after the 'quick' result, and before the longer results came in.

My DH (who in the past worked as a chromosomal geneticist) researched it thoroughly, and I do feel 100% reassured that the results were accurate.

They simply don't get these things wrong, the system is as foolproof as any system can be. Too much is riding on these results for human error to be allowed occur.

I actually spoke to a counsellor (Which was extremely helpful), and she told me that worry about the lab 'getting it wrong' is a very common reaction for women in our situation.

My heart goes out to you, and I hope you manage to get some peace soon. I found the time between finding out the amnio result and before I had the termination the hardest to deal with.

Please be kind to yourself. You sound like a great mother, doing her best for her family in an incredibly difficult situation.

I have found the Ante-natal tests and choices board to be a huge support.

Thinking of you. x

[AramintaAlice]

Olivia, thank you soooo much for your reply. I've had the termination now and I reel I'll never get over it now. I saw the baby and held her tiny hand and cannot believe what I've done even though I know I didn't really have a choice. I watched my 8 year old eating her tea tonight and the sight of her little hands on her fork sent me back into floods of tears over my baby who was in effect killed by her mother. I felt reassured about the research that your husband did especially as he would have actually had access to proper information in his position, so thanks so much for that.

I have asked for the baby's tissue to be tested so that I will know for certain and can feel a little more at peace but I suspect even then that I'll still carry this guilt forever (and deserve to as well).

Thanks once again, and I'm sooo sorry for your awful loss too, I truly am x

[Nicandrick]

Hi i know this is an old post but i am hoping that u see my comment we are in exactly the same position and word for word have said exactly what u did please could you let me know rhe results of the tests done afterwards x

[TheHaveN0ts]

This is a very old thread and I would think medicine would have mo ed on a bit. Amnios are pretty accurate as cells of the foetus are tested